Minute To Win It

Sometimes Mom's Need Help with the Baby ...





Sometimes you need to help organize things, maybe sort the toys ...





And, we always work better as a team ...





Of course, sometimes, Mom may want you to help with dinner. So, you might want to learn how to handle the noodles. But, watch out! Don't burn your hands!





Don't forget the floor always needs to be cleaned after dinner!





But, when dinner's over, the night's not over, there are always things that need to be picked up...





I think you've done well and you've earned a treat. Just one more challenge...

TeamAbility -- Hula Mat

Today at TeamAbility they used a "Hula Mat."  It's a great device that is essential made from a typical gym and circus grade hula hoops.  They worked with Ryan on learning how to roll from side to side.  The mat helps to teach him how to roll.  You can watch the video and I think you'll understand it better than I can probably explain it.  He's done this a few times now and I can already see progress from the first time.

Ryan's First Day at TEAMability

Today we took Ryan to the new therapy location, Team Ability. It was amazing!  Ryan's nurse and our good friend Tami came along.  (If you know Tami, you'll know she's a great photographer.  Well, today, she was a great videographer.)

We had the most amazing day! Ryan took what I'll call his "first steps." I'll apologize in advance to my other children, but these moments were better than my other children's first steps.

If you're only going to watch one video, this next one is the ONE to watch.  

What you didn't see in that amazing video is that he actually picked up his right leg all by himself and lifted it up over the box.  The box is filled with white Styrofoam peanuts, which he apparently really enjoyed touching.  He also "walked" all the way across the box and made his way to the other side.  I wasn't really sure what he was wanting when he got there.  We tried turning him around.  I tried offering him the choice between the Styrofoam peanuts and the river rocks, but he didn't really seem to want either.  We eventually turned him toward the river rocks.  He spent time hovering with one foot in the peanuts and one foot on the rocks, seemingly comparing the two.

If you're one of the people who've wondered how much Ryan thinks, let me assure you:  he was making choices today.  Not only did he obviously know where he wanted to go, but he seemed to know how to make his legs help him get there.  It was awkward motion, but he did it.  And, yes, I cried.  I've never seen my 5 year old son take a step, and today I saw him lift his leg over a box to move himself into the box.  Yes, I cried.  And, I've watched the video more than a dozen times now.

I've skipped a lot of the in between stuff, even though Tami was so awesome at taping every single moment of our hour.  Later, he made his way back to me.  At first I thought he was telling me he was all done, but then he started hugging me.  Well, I'll just let you watch this ...

I think he was sharing his joy with me.  What do you think?

Why Not?

Wednesday night I went shopping for fabric to make a quick quilt.  I had Johnathon and Deborah with me and since I always feel very overwhelmed at picking out colors for projects, I asked for their help.  With a bit of effort ... okay two trips and a near anxiety attack, I found these fabrics and was trying to find three other fabrics to match them:

Deborah and Johnathon were good sports and were giving their opinions.   I had been told my a neighbor who whips up quilts that I needed 3 or 5 fabrics to make a quilt.  After a few minutes, I thought I found a great match for this fabric and received confirmation from the kiddos that it did indeed work well.  However, a grandmotherly ginger shopper with glasses perched on her nose and a brightly colored quilted jacket just couldn't keep silent any longer.  Shaking her head, she said, "No.  These are not fabrics for a man."  Then she proceeded to spend the next 20 minutes explaining to me the art of fabric choices for quilting.  My head was spinning but I was really appreciative.  I really would have appreciated if she had just picked the fabric and put them in my cart.  But, no, after leaving me with advice like, "Don't forget you need texture and movement..." she left. 

I felt more knowledgeable perhaps, but still incapable of matching fabrics.  So, I picked up the two that she used as examples of movement and texture.  Luckily, they came in a "set."  I found all the colors they came in and bought them.  Here's what I  ended up with...

It's nothing fancy, but it was a fun quick project and I'm thankful I was able to do it.   I hope it's enjoyed.

Monsters

Dwight shared this on his Facebook status tonight.  I thought it was so typical of both Dwight and Deborah that I just had to keep it forever.  Here's what he said:

So the other night it was time for my youngest daughter Deborah (age 7) to go to bed, but she was taking her time.
Me: "It is almost 9 o'clock. That is when the monsters come out."
Deborah: "I'm not afraid of monsters anymore. I got rid of them all."
That's my girl...

Pinterest

Don't you just love Pinterest?  I do ... except when I don't.  I don't love that it can eat up a lot of my time unintentionally and that it doesn't always do what I want it to do.  Like right now.  I want to use it to mark this page on education and special needs so I can come back and reference it later; however, it won't since there are no pictures.  Thus, since I try to be a problem solver, you get this boring post.  Thanks, Pinterest.  ;)

We're In!

More than 2 years ago I put Ryan on a waiting list for TEAMability, an amazing organization that offers physical, occupational, and speech therapy for special needs kids in a really special way.  Today we finally moved from the wait list to the patient list!!  HE'S IN!!! 

This answer to a prayer came at the perfect time.  Our current provider just dropped his occupational therapy completely and wanted to cut his physical therapy to once a month because "he isn't making enough progress" and they didn't want to get a denial from our insurance.  Yet insurance just authorized 4 hours each week of physical and augmentative therapies for the next six months. 

I'm so thankful!!

Self Portraits

A little over a month ago, Ryan's awesome speech therapist introduced Lemon Glycerin Swabsticks.

They are like large, lemon flavored q-tips.  We rub one on the inside of Ryan's mouth.  We're hoping it helps strengthen Ryan's suction and swallow so that some day maybe he'll be able to eat by mouth again, or
 at least be able to taste some foods.

Since introducing this lovely lemon swabs, Ryan has discovered his fingers.  You probably already know that this is a very important milestone that most infants do some time during the first year.  Well, Ryan has never brought his fingers to his mouth before.  During the past 9 months, maybe less, he would blow raspberries on his arm, but never explore his mouth with his fingers.

Oh, but now!  We can't get his fingers out of his mouth!  And, it's not just a fingertip, or even one finger.  He typically has all four fingers completely in his mouth.  He must not have any gag reflex.

On one hand ... sorry, just couldn't resist ... it's a wonderful thing, but then on the other hand (yes, I'm still enjoying the pun) there's the excessive amounts of drool that's being created not to mention the red marks his teeth are making on his fingers.

So, you might be wondering what all of this drool and lemon glycerin swab talk has to do with the title of "Self Portraits?"  Let me tell you.

Ryan's teacher asked us to do a self portrait.  She gave us a little cut out that reminds me of a gingerbread cut out.  We've done this before each year.  You might remember his very first drawing in 2011, or you can look at it again by clicking here.

This year's self portrait was extra challenging!  I thought we'd use finger paints.  Ryan really likes finger painting; then I quickly realized the finger paints were going in the mouth with his fingers.  Not a good idea.  So, I grabbed some brushes to use, but Ryan had no interest in holding the brushes today.  Then I jokingly said, "We could paint with mustard."  So, we did ... and ketchup ... and we even tried relish.

Do you see the resemblance?

Jumping In

Yesterday Deborah discovered that it's more fun to jump into the water without me catching her.  So, the first thing she wanted to do today when we went to the pool was jump in with me video taping her so that she could send the video to Daddy.  She was SO excited for Daddy to see her jumping into the water!  Unfortunately, I wasn't able to send it to him while we were at the pool.  But, I told him all about it and he was SO proud of Deborah. 

This video is for Daddy ...

Deborah ...

Deborah just had to try it...

Aging and Parking Spots

I've been feeling a little overwhelmed lately with the limitations of my body.  Next Sunday I turn 45 and although 20 years ago I thought it would never happen to me, my body is starting to show new signs of aging.  I've had wrinkles for a few years and the grey hairs came in with a vengeance after chemo, but now I have all new creaks and pains.
 
A few weeks ago, I was doing squats--nothing new just your typical run of the mill exercise squat--using only my body weight for resistance when I noticed a pain in my mid to lower back.  It wasn't severe or shooting, but it was enough of a pain that I stopped after finishing only half of the planned squats.

Last week, I started having pain in my right shoulder and arm.  It made it very difficult to lift or even move Ryan.  And, my right hip makes a creaking noise now when I move, much like the old wood floors at my Aunt's house did when I was a child. 

To add insult to injury, I spoke to a physical therapist about all of this and she simply said:  "You're not getting any younger."

The hardest part of accepting all of this is that while I may not be getting any younger, Ryan is getting older and bigger for which I am very thankful.  Somehow I just need to figure out how to make my body stronger and stop this aging process.  I can only imagine how much more difficult it is going to become to move him in and out of the car seat, bed, and wheelchair.  I need to be able to care for Ryan long term and that requires me being able to do all of those things. It's a little overwhelming.

Saturday I was thinking about all this as I loaded the groceries in the van.  When I was returning to the van after putting away the grocery cart, a lady who was walking toward me gently smiled at me and said, "I pray there will always be a parking spot for you."  Now, I wasn't parked in handicapped parking because I didn't have Ryan with me.  However, I suppose she saw the tags on my car and maybe the wheelchair.  But, I thought a lot about what she said and how thoughtful it was for her to say it to me.  She and her husband seemed to need handicapped parking more, even if Ryan were with me.  Yet, the fact that she would pray for me to have a spot was so generous and kind.

While I feel very overwhelmed with my aging body and the need to strengthen so that I may do all that is required of me, I am grateful for the many blessings that I have and recognize that I have been blessed with so much.

Questionable Reading Materials

Today I was having a conversation with Dwight & David about some questionable material assigned for an English class. As we discussed my opposing arguments, Johnathon said, "Would you read that if the Savior were in the room?" and then Deborah, quoting lyrics, said, "If the Savior stood beside me, would I do the things I do? Would I think of His commandments, and try harder to be true? Would I follow His example? Would I live more righteously if I could see the Savior standing nigh, watching over me?" 

Seems to be a great standard to live by ....

Slacking?

I'm sorry if it seems to all of you I have been slacking.  I'm sure you've noticed my sparse postings over the past few months and my lack of any postings since Ryan came home from the hospital. 

This semester I thought it would be a good idea to take 8 credit hours in school.  Oh was I wrong!  With all the unexpected emergencies, Jessica graduating and getting her ready and sent off to college, and the beginning of summer, it has been tough to keep up with 8 college credit hours.  I am still managing 2 A's and struggling to pull the B back up to an A.  That B will be why I won't be doing anything fun for the next week -- except math.

I've always loved math until this class.  My family thinks it's great that now I can relate to their feelings about math classes.  Perhaps.

I promise I've been taking lots of pictures and mental notes.  As soon as I get through the end of July, I will update you all on everything that's been happening and give you lots of pictures.

Till then, send me good Math thoughts... ;)

Sunday's Doctor Visit

Ryan had a really good night last night. He has been moved from guarded condition to stable. His oxygen saturation levels have been rising and staying really high. At 12:30 today we took Ryan off supplemental oxygen.  The real test will come when he goes to sleep.

Ryan's lung CT showed that he does have pneumonia.  It was hiding behind his heart.  The good news is there was not a lot of scar tissue!  So, the doctor has asked that we continue the meds as ordered but we can go back to every 4 hours for the IPV treatments.  YAY!

His lungs are sounding a little better.  His O2 sats are hovering right around 94-96 without any supplementation, even when he's napping. The trick will be to see whether he can keep them them overnight.  He must stay off supplemental oxygen with his saturation levels over 92% for a full 24 hours before we can home.

Saturday Night's Update on Ryan

Ryan's O2 sats have come up a little today and we've tried weaning him a little.  We've moved him to 1 1/2 liter and he seemed to do fine.  We tried just 1 liter for a while, but he didn't seem to like that too well.  So, I suppose we'll just hover at 1 1/2 for a while.

Great Teacher

Ryan seems to be feeling better today.  One of his Respiratory Therapists, Holly, started being a little more aggressive with the IPV machine and I think it's making a difference. 

Additionally, Ryan's teacher, Mrs. V and her husband, came to the hospital to see him.  She is the best teacher ever!  We had the nicest visit with her.  I had a feeling on Friday that Ryan would really like to see her.  I'm sure I was right!
Every time she walked away from Ryan, he would call her back with this definite "Mmmm" sound.  Then she started rubbing his head, and when she'd quit, he'd wave his hand as if to say, "More!  Keep going!"  It's a good thing he's so adorable.  Otherwise, it might just seem really demanding!  :)

You know, earlier this week when I was at home with Ryan, I was really worried about him.  He was so pale white and sick.  He certainly wasn't enjoying this experience at all.  The thought occurred to me several times that Ryan might go Home this time, and that perhaps Ryan was ready to go Home.  I had lots of time to think about it as the minutes of the night passed, waiing for the next time his sats dropped too low and he needed to be repositioned.  It was a sad, and perhaps scary thought for me.  I don't think I'm ready for Ryan to leave our family, even if it's only a short time.  I felt a little overwhelmed and sad by the thought.  Okay, really saddened by the thought.

Then yesterday I went to the school to see a special activity that Deborah was doing.  As I was driving to and from the school, I listened to a talk by Mary Ellen Edmunds.  She was talking about lessons in gratitude she learned from her time in Africa.   Some of you may be familiar with the stories she told.  She was there during a time when much of the world was having a drought.  The Church of Jesus Christ of Latter Day Saints invited all of their members, worldwide, to join together in fasting for water.  This man, who did not have running water said he wished that he could send some of their water to those of us in the United States.  Isn't that amazing!  As I listened to her talk, a feeling of gratitude washed over me.  Somewhere in the world, a mom, or perhaps several moms, were losing their little ones without any preparation.  I could for a moment sense the great shock and devastation of thinking all is well and then having such horrific news.  And, in an instant, I felt such gratitude for all the moments I have.  I felt gratitude for the times when I am able to prepare myself for that eventual day when I will have to say good bye to my sweet little boy. 

I hope it will not be too soon.  I also pray that he will not linger so long on earth as to be miserable here.  My world is filled with joy and a measure of that joy comes from Ryan and all the lessons I have learned from him. Although I would be glad to serve him all the days of my life, I am truly thankful for the moments of reflection that make me appreciate each moment a little more.

Thanks for all of your prayers!

Friday's Update

No change today in Ryan's status.  He's still dropping every time his supplemental oxygen is moved down below 2 liters.  The doctor came in to visit.  He said he would have anticipated a change by now.  The 2nd set of x rays look better. He thought we should at least be able to start weaning him by now.   Additionally, the white blood cell count and the CRP was not as indicative for Pneumonia as he would have anticipated.  So, he ordered a CT Scan to see if perhaps we just have a lot of scar tissue in the lungs or something else going on in there. This may just be the unknown chronic Ryan disease or another chronic disease.  Also, apparently something happened and they need to redo the viral panel. He also increased the frequency of the IPV treatments to every 3 hours.  Ryan is not going to be thrilled about that.

Visit from the Doctor

I spoke with the doctor today.  We reviewed the possible causes:  bacterial pneumonia, viral pneumonia, or other respiratory infection.  The chest x rays and the blood work support the early stages of pneumonia.

He said to anticipate the hospital stay will be 4-5 days.  Oh, boy. 

Ryan's May Hospital Visit

Ryan was unable to maintain his oxygen saturation levels above even 90% at home on 2 liters of oxygen; he was pale white, cold, and his lips and nail beds were greyish blue.  Not a good thing.  Wednesday afternoon, after talking with the Pulmonologist, we transferred him to a portable oxygen machine, loaded up a bunch of machines, and took him to the ER.  By the time we arrived at the ER, he had pinked up a little and was hovering right around the 92% area with oxygen.

Their was a line at the ER; however, we were moved to the front of the line.  I suppose that's one advantage to walking in to an ER with a child already on oxygen and lying across your arms:  you certainly never have to wait in an ER.

The ER doc ordered blood work, a chest x ray, and a viral panel.  Then we waited in the ER exam room for what seemed like an eternity, but in reality was only close ... we checked in sometime around 7:30 pm and was moved to our hospital room around 1: 30 am Thursday morning.  I was so tired from the two sleepless nights before that when George was asking me Ryan's history questions, I kept falling asleep.  I felt bad, but at 2:30 am on a good night I might fall asleep on you.  At 2:30 am after not sleeping much for two consecutive nights, and knowing that I now have a medical staff to watch over Ryan, I think my body was just shutting down.

Ryan was placed on the step down unit from the ICU where he can be monitored closely.  He is listed as "guarded" condition, which here is between stable and critical.  We are doing IPV treatments every 4 hours, some new meds, and of course his normal meds.  The little guys is exhausted.  He is still requiring 2 liters of oxygen just to keep his saturation levels at 92-93% and he's still have frequent dips into the 80's. 

An Update on Ryan

Last Friday we had a visit with a new Pulmonologist. We were referred to him when Ryan was hospitalized about a month ago. Ryan seems to have a pattern of going to the hospital every spring for respiratory issues.  We were hoping to avoid future hospital visits by doing some preventative treatments at home.  But, it wasn't to be.

Friday morning, Ryan felt just a touch warmer than usual and even looked a little flushed, even the new doctor noticed it.  However, we went to our appointment and received a great treatment plan.  We were to start doing a new medicine with an inhaler and a spacer every morning.

 (I must admit that I'm disappointed that Ryan's is just yellow.  He is lacking the adorable dog face. )

He also gave us a treatment sheet with options for when Ryan wasn't feeling good:  nebulizer treatments and steroids.  Over the weekend, Ryan was not feeling well:  low grade fever, lethargic and a little bit of a cough.

Sunday night,  his fever spiked to 104.8, but it came down with the typical treatments.  On Monday, he seemed completely well, which was a huge blessing because we had lots we had to get done that day.  Then just as I finished all that I needed it seemed to do, he started running a fever again.  By Tuesday morning, he was obviously having a lot of respiratory distress so I did as I had been instructed and called the Pulmonologist.  After describing that he had been struggling all weekend, they wanted to see him soon. 

At the doctor's office they were very worried about his low oxygen levels.  They gave him a breathing treatment and a dose of steroids.  The Dr. then made out a new more aggressive treatment plan, which included our newest toy:  an IPV machine. 

I've now started calling the IPV machine, the green beast.  In addition to it's lovely retro feel, it then has a bunch of stuff that hooks up to it.  At one end is a little mask, that goes over Ryan's nose and mouth.  It then pushes air into his lungs and nebulizes at the same time.  I have a lot to learn about this new machine. What I do know is that Ryan does not enjoy his treatment time, and it's going to be tough to do this 3 times per day when he's well.

A Respiratory Therapist brought the IPV machine to the house late Tuesday afternoon.  I had an evening nurse there that night, but Ryan was so sick by night that I didn't really want to leave him.  We got through the evening, but night time was really tough.

Ryan's oxygen levels were dipping into the low 70's.  Remember they need to be above 92 to stay off oxygen, and his baseline is 97 or higher.  All night long, I had to keep repositioning him and waking him to get his O2 levels back up.  Wednesday morning came and I turned his care over to the daytime nurse.  I had to go to a quick meeting, but while I was away I checked in on Ryan to see how he's doing. The nurse seemed to indicate that his day hadn't been normal, but it was good.

With that report, I was a bit surprised to find Ryan looking very pale and still having a lot of breathing issues.  With 2 liters of supplemental oxygen, he should be able to function at, or at least very near, 92.  I was relieved to think that the Respiratory Therapist (RT) was coming to the house.  I thought she'd definitely be able to show us all that her plants are doing.

When the RT arrived, she didn't say much about Ryan's appearance, but got busy quickly.  She tried to give an IPV treatment, but his O2 levels kept slipping down hill. She finally suggested that it was time to call Dr. Smith. When we called Dr. Smith, he said it was time to meet him at the hospital.